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Posted 2/25/2015 3:20 AM (GMT 0)
Madelyn,
My sincere condolences for the loss of your father. What a heart wrenching time you have been through.
I can see your heart is broken. And yet you offer us encouragement - thank you so much for that.

With all my heart I hope you are able to find your way to peace.
Susan
Posted 2/25/2015 3:26 AM (GMT 0)
Sal,
You and Ted have been on my heart - Just want you to know you're not alone.
Susan
Posted 2/25/2015 4:00 AM (GMT 0)
Madelyn,

So very sorry to hear of your fathers passing. He fought a good fight. He was lucky to have you by his side.

Last month, I ask my Oncologist if and when my current treatment stops working, what's next, she said: Xofigo! Sure hope and pray this works for me.

You and your family are in my thoughts and prayers.

Dave in Bartlett, TN
Posted 2/25/2015 4:14 AM (GMT 0)
Sal and Ted,

Thank you for your update. Ted has fought a long and hard fight. He's real lucky to have you by his side.

Last month, I ask my Oncologist if and when my current treatment stops working, what's next, she said: Xofigo! Sure hope and pray this works for me.


You both are in my thoughts and prayers.

Dave
Posted 2/26/2015 7:13 AM (GMT 0)
Hoping to get an update on our friend Quincy? Also wanting to let Sal know that she and Ted are in our prayers and we hope to hear from her soon. Lots of others we haven't heard from lately. Lisa the redhead skiier was on a vacation, and both Sues. Moonlitnight also. Cathy, is Xtandi working second go round? Thinking about you all and hoping to hear from you.
Beth for Gary
Posted 2/26/2015 3:24 PM (GMT 0)
Hi Beth,
I sent you an email to catch you up on some stuff but for all that might be interested, I started Xofigo yesterday, no big deal as far as initial SEs go, just my normal fatigue and a small headache. I appreciated the extent to which my Cancer center went to prevent contamination of the room where they did the procedure, right down to sweeping the entire room with a Geiger counter after all was done.

Madelyn. I am so sorry to hear about your dad, from the sounds of it. Xofigo was the final straw. You can only push our bodies so far. Again, my condolences to you and your family, he sounds like a wonderful man.

Best of luck, Ted . . . Q
Posted 2/26/2015 5:48 PM (GMT 0)
Madelyn;
So very sorry about the passing of your dad. With deepest sympathy ! Science gives us these new treatments but sometimes I think the body rejects the notion of having radiation implanted. My hubby is on treatment #3 and I appreciate your sharing at this difficult time. Dave has been a warrior In this cancer since 2013 and I am holding on to the hope its a looong road.We will never give up trying to find something that is a magic bullet to his cancer. I am ot acceping that the xofigio is our last resource . I will heed what has happened as Daves # have been going down and will stop the course of treatment if its affecting bone marrow. Thank you so much for sharing and once again deepest sympathy. Sue and Dave Mather💙💙💙
Posted 2/26/2015 5:59 PM (GMT 0)
Hi Sue,
I'm Interested in sharing my journey with Xofigo with others who are currently undergoing the process like Dave is. If you are also interested in exchanging experiences please feel free to email me, my email address is on my profile. As I wrote earlier on this thread, I got my first injection yesterday and am feeling slightly more fatigued than usual but really OK as far as the other predicted SEs go. If you don't have the time to connect, not to worry. I have nothing on my hands and I forget that other people lead a much busier life . . . Quincy
Posted 3/1/2015 6:02 AM (GMT 0)
Madelyn, I am so terribly sorry to read about your dad. That is just awfully sad for you and your family.
Sal, oh dear... this doesn't sound good but we must believe that what will happen will happen but still believe in miracles.
Quincy, will you be posting about your Xofigo experience? Don had his first injection and has been feeling a lot better: less fatigue and eating extremely well for a change. But the metastatic spread in his bones was awful at the last scan and his ALP was 578. Myers has got people into remission from extreme bone involvement but those men were still responsive to ADT.
Posted 3/1/2015 6:13 AM (GMT 0)
Moonlighting, so happy to hear that xofigo has helped Don feel better. Sue, that's really awesome that Dave's numbers are going down. I understood that xofigo doesn't usually initiate a drop in PSA.
I will keep you all posted on Gary's pilot study outcome.
Beth
Posted 3/1/2015 7:01 AM (GMT 0)
TrHi Moonlighting,
I will most definitely be posting on my Xofigo experience, I guess I should start a new thread as I've found that this route is being taken by more and more guys. In my Centre there are four of us and since no names are being passed around my Nuclear RN has told me that none of them are experiencing even mild SEs. I got a wave of nausea on Sat I believe it was but I took a Zyrtec and it calmed that down in a hurry. I won't be getting any more testing until 03/11 so there's really not that much to report as of yet. Will start new thread after next testing and thank you for asking.

Also, there has not been much pain to start with. I was taken I to this study to see how Xofigo works as a preventative measure rather than palliative. My only reportable symptoms of PCa besides two old mets from initial Dx ar a slowly rising PSA, 4.3 to 122 in 17 months. However, due to Lupron aggravated OA I have by choice been on a rather high dose of Oxycodone and OxyContin which might be masking pain from micro mets. However, I've had 4 clear bone and ct scans during that 17 month period so who really knows what's up. Allen has mentioned a high tech Bone Scan but I'd have to travel which is out of the question, money wise and health wise. I'm glad to hear about Dons pain relief and will keep everyone posted . . . Q
Posted 3/2/2015 5:12 AM (GMT 0)
Hello quincy17...
My suggestion would be to continue on this thread with your additions, or if you start another use the same verbiage but say Part II or add your name, so this information from this thread will not be lost.

I won't be adding anymore information for this therapy since husband is no longer active in it's treatment. He is not doing well at all and I believe we will be calling in hospice shortly. He is very weak and fatigued, mostly due to blood loss, and the activity of the cancer within his body.

Please continue to keep your blood levels (platelet's) in check for they are very important in the treatment of this drug. 50,000 platelet's is necessary to continue, any less and it's a "no go". At least that was what we were advised.

Good Luck to all of you PC Warrior's and caregivers, God Speed to all!

Peace, Hope and Love to all

Sal
Posted 3/2/2015 5:56 AM (GMT 0)
I will take your advice Sal, it would probably be best to do it soon as I feel that you are getting overwhelmed by the realities of end stage and this would be one small way that I can help take a part of the load off of your shoulders. My warmest regards to Ted, he is a brave man and you are exceptional. It is my feeling that these things should be kept short, with love and prayers . . . Quincy
Posted 3/2/2015 11:27 AM (GMT 0)
Sorry Sal that you are facing yet another life challenge. It cannot be easy as most of us wives know that with this stage of cancer we will be where you are.Thank you for sharing Teds xofigo treatments with us.I am phoning our oncologist this morning as Dave is just so short of breath and I think its a definite sign of of low counts. Blessings and prayers to you both .💙💙💙
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